Sweet Marie

My heart is heavy for sweet Marie's family. So many times the past few days I have been brought to my knees for them. 

Thursday they welcomed their beautiful Sarah into their family. Friday they said goodbye to their daughter sweet Marie, who had Leigh's disease. 

Please keep Mom, Dad, big sister Josie, and new baby Sarah in your prayers. We know Marie dances with Jesus, and sings with angels but, the pain of missing her can be overwhelming. 

Please visit: http://josieandme.blogspot.com to leave them some encouragement and love!

Sunshine

These days, they just aren't easy. I am filled with ups and downs all the time. I don't know what it is, except I strongly feel it is a spiritual attack. I'm working towards making changes in my life, and every day I feel excited about it, every day I have time to really spend taking action towards those changes, I feel gloomy, unmotivated, alone, overwhelmed, tired, and my body just physically feels like lead. I hate it. I try to reach for God, but it isn't always my first course of action, and sometimes I just don't even know how to approach Him when I feel like this. I just seems easier to curl up in bed, and sleep. I know Satan wants it to stay like this. I know he doesn't want me to have joy, or physical healthy, or spiritual wisdom, or personal strength, and so he zaps my will to take action. Thankfully, I've come to realize what these days are, days the enemy wants to steal from me. I'm arming myself for this battle.

Through all of it though, God has give me a little ray of sunshine, a shining star who helps pull me up during the worst days when I can't seem to pull myself out of it. Looking into my nephew and seeing his smile, it's like getting a smile from God. He is sunshine on the rainy days..

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I'm a bad blogger but I've a mighty God.

Ugh. I didn't think I'd let myself go well over a month without blogging.

Anyway. I have a button to the left of my blog, for baby Stellan. He has a serious heart condition that has put him in the hospital (again) and he is fighting just to stay out of heart failure and to stay alive. If you haven't been there, please check out the blog but, most importantly, pray for baby Stellan, for his family, and pray the doctors have wisdom int he best way to treat this sweet baby!

Now, where have I been? Gee, you live in survival mode for months at a time when something like cancer hits your life, then crisis ends, and suddenly you crash and burn. That is what I did! More than that though,when my Dad got the remission words, I was in total shock and disbelief. I waited for the other shoe to drop. ANd, believe it or not, I got ANGRY with God.

When I was 15, and I experienced the first loss of someone important to me, I clung to Jesus for all it was worth, and he brought me through that grief. Just the other day I drew out the journal that brought me through the first few months of that loss, and I am astounded at who I am today compared to who I was then.

What I did not realize was the attitude I came out of that experience with, one that is NOT from God: I can deal with death. Death is a "final" out come. It doesn't reverse itself. Yah. Ok, so let me explain. We my Dad was diagnosed, I was CONVINCED he was going to die. I told myself the Andrew dying when I was nearly 15 was God's way of preparing me for this loss, as a young adult. I thought that the fact my Uncle had THE SAME cancer , in the SAME location 7 years ago, and died from it, was Gods way of preparing me that my Dad would die. Not to mention, the odds we were given were just NOT good. When taking my Dad to treatments, I met many people who had much less severe cancers (by that I mean an earlier stage, or a higher survival rate), or who had a much less aggressive treatment plan, being on the verge of dying. THey were very ill. In my mind, all this was to prepare me for my Dads death.

Then... we were told he was in remission. And I got angry. I don't know what remission will mean for our future. I wonder if it means God will work on both my parents hearts, and some day my Mom will move back IN the home. I wonder if it means GOds giving my Dad yet another reason to not just speculate Christ but trully embrace him, and abandon his heart and life to Him. Maybe God is giving me an opportunity to get more established financiallys so that when my Dad IS gone, I will be able to care for myself, and my Mom.

The biggest reason for my anger, and my fear... is "Dear Lord, now the future is UNKOWN!". The was my heart cry. Because once you "have cancer" you kind of always have it, yoru just either active or inactive. Your in remission or your in relapse. And...WILL my dad relapse? What if he does? When will he? Will get through it a 2nd time? Will he even TRY? Will he be saved by then? Will he get to hold my children? Will he be at my wedding? Will he... what if... then what?....

And my fear, may anger caused me not to seek out my God. I suprised at how quickly not communing with him on a regular basis made me ashamed of who I was behind closed doors, and even in the wide open. I am ashamed of things I have done and said and even things I did not do, to my Dad, to my Aunt, to myself, to others. I shut down in a way I've never done before. In the past I've hit "rough patches" or "dry times" but... it usually included ONE or two of: Not praying, not reading the word, not going to church.... it has never been me omitting all 3 from my life.

An argument with 2 family members, one I realize was all our fault but that God place the "key" to making it a peaceful solution, that I chose not to use the key in, came to a head, and it was NOT good. Not only that but the lack of God in my life made me in capable of seeing my Dad the way Christ does, a very wounded, scared man who has never known the love of a father. I've always prided myself on my ability to maintain relationship with each of my family member no matter what they have done to me and inspite of extreme multi faceted dysfunction the penetrates generations. I quickly learned this was NO skill of mine but God's Grace and Mercy for them working in me. I learned that when his Grace and Mercy were not there because I did not seek them for myself, I could not give them. In short order my relationship with my Dad was nearly destroyed. And it would have been my fault. Not because he didn't do things the were unspeakably hurtful, or because I did anything unforgivable but, because I did not allow God to be the leader of my relationship with him. Maybe in some way, since he wasn't going to die now, I wanted to close myself off from him emotionally so that when he does die, when the cancer does come back (that was my attitude) I wouldn't have to start the grieving process all over again. Ouch.

Anyway, at the end of possibly the most painful nights I've ever had, a night I had a decision to make (and I think I made the right one), I realized how far I had fallen, and how desperately I both needed and wanted my Jesus in my life. I went to my room , cried... no sobbed, for a long time and how close I came to making a decision that would have completely destroyed my relationship my Dad forever, and closed his heart to the ONE person he will listen to Christ's words through. Yikes!

In my room, I cried out to God, and asked he forgive me. Of course he Did, and he allowed me to just sit in his embrace as I cried, and prayed, and finally, even opened his Word. Oh how sweet that surrender was. I felt lighter than I had in months. Since then I've been a basket case as I see Him renewed in everything in my life, from my job, to the creativety of imagination in the current novel I am reading, to my words to him, and his still small voice to me, and especially in HIS words to me through the bible. His beauty, love, forgivness, and acceptance of me for where I am AT is overwhelming and draw me to tears, like it's new. FOr that, I am so thankful. For all of this I am at peace.

Now, so many things deteriorated during this time, including my ability to focus on school work. So, now, it's crunch time to catch up and STILL manage to pass.

Nephew Update

My sweet, sweet, 22 month old Nephew, Zackery, is pure JOY people. I can't express how much this boy means to EVERYONE in my family. The hardest of hearts melt for this blue-eyed dimpled toddler. I have mentioned a few times he is physically delayed For personal records, I have posted a more detailed version of the update below pictures.  Before the pictures is just an update without past information, or as many details. 

Short version: At 22 months old, Zackery is completely on target for all cognitive skills such as language and language perception, problem solving skills, etc.  His fine motor skills are in the 50-60th percentile, about average. His gross motor skills are delayed by 11 months, putting him at the development of about an 11 month old. He is crawling like a mad man, pulling himself up and cruising furniture as well as letting go for a few seconds to stand unassisted (perhaps 5-15 seconds), every so often you can coax an attempt at a step but, usually after on step he THROWS himself into you, and laughs hysterically so, basically, he is not walking yet. He has begun both occupational and physical therapy, which I think will be very beneficial. He has also recently had his adnoids removed, which has led to fewer ear/sinus infections, and is in the process of being tested for both food and environmental allergies. All these things have/will hopefully reveal potential causes for his delays. 

Frankly, I've kind of enjoyed having him be unable to walk for an extended time, giving us a bit of extra baby time. However, now that summer is here, and I attended my friends daughters first birthday and seen her toddling, I do really want Zackery to start walking. I want to see him run from toy to toy of his choosing at the park. I want to see him chase after the puppies. I want him to be able to begin trying to ride a tricycle, and I want him to be able to keep up with his little friends. I also have to admit that carrying around 26 pounds is not easy! Lol. 

Z. has a huge personality that is not to be reckoned with, and I am enjoying watching him grow into a toddler and leaving his baby days behind. He has the most charming and endearing smile, loves animals, knows how to tell you what he wants, adores water and being outside, gives the sweetest kisses, and has everyone wrapped around his little finger.

Cheesy Grin

Hey, NO babies standing on the counter!!

I can stand tall in Grandpa's chair!

Just....ONE....Step.

Waking up Happy after a nap with Aunty.

Zackery has shown himself a bit slow in gross motor skills since he was about a month old. At 3 months he could not hold his head completely upright, at 10 months he still did not sit up, and at 15 months he still was not crawling. Now, at 23 months he does not walk. Oh but the things this boy CAN do. He crawls like a made man. He can skooch backwards down a flight of stairs. He climbs up on things. Most recently the Z-Man has been pulling himself up and letting go to stand unassisted for 5-10 seconds at a time, and occasionally makes an attempt at a step or two. Probably his biggest hurdle to walking is that he things it is just a hilarious game to take one step, then forcefully thrust himself backwards or forwards into the supervising adult, so they must catch him! 

Anyway, Zack recently had another evaluation. The therapist said he seems mentally/cognitively typical for a nearly two year old, perhaps on the later spectrum for speech but not delayed, his language perceptions is definitely find! His fine motor skills seem to be fairly typically, perhaps in the 50th-60th percentile for his age group, about average. Zack's biggest challenge (which we already knew) is his gross motor skills. Here he is hitting the charts at about an 11 month stage. They have no specific reason or diagnosis for this delay. His Mama has cerebral palsy and some mental delay but, has thrived and is doing really well raising him. With that said, at times she hasn't appropriately stimulated him, so some of it could be genetic, and some of it could be simply lack of opportunity to develop and grow.

 I personally have two other theories of influences: one, Zackery from very early on has had multiple ear infections, sinus infections, and respiratory infections. These can affect your sense of balance. It seems Z. has had one infection after another for nearly two years, and even when he is healthy, he has rattly breathing and congestion. He was even diagnosed with sleep apnea due to his rattly breathing, where he would stop breathing in his sleep for a few seconds. Oh, and man can this boy SNORE! So, I feel being he is primarily delayed in gross motor skill, it may be linked to his health affecting his balance, sense of stability and equilibrium. So, that leads to my second theory: the cause of the infections, and the ever present congestions/rattly breathing. I believe (as does his new pediatrician) that Zack has some allergies, primarily food, but also environmental I am sure. These allergies can cause his immune system to be weak, as well as innerfere with cognition, and even physical strength. Before Zack was officially diagnosed with sleep apnea, my Mom took him to the E.R. when she began noticing his spells of NOT breathing at night. This led to tests, which led to discovering Zackery had large adnoids and slightly large tonsils. If it were my kid, this would have been one more reason to pursue allergies, as tonsils/adenoids are part of the lymphatic system and they get inflammed when irritated. Unfortunately, my Mom/Sister/Doctors don't see things in my unconventional manner, and their method was to remove his adenoids (they don't remove tonsils in kids this young because recovery is so harsh and post surgery, the swelling can cut off the airway in such a small child, nice huh?). After rescheduling surgery 3 times because Zack was never healthy long enough to be safely sedated, they finally removed his adenoids, which turned out to be MUCH larger than even the doctor originally thought. It may not have been the way I'd have handled it with my child but, since surgery Zackery breathes quieter, sleeps with out snoring or having apnea, and has in general been much healthier. Oh, and NOW the doctor has ordered allergy testing. 

So, Zackery continues to develop and grow, at his own pace, and brings joy to all of us!

A Doozie

I have NO idea what hit me, but my fall/winter/spring of avoiding any major germ catastrophies came to a screeching halt at the beginning of our summer. Seriously, all year I had MAYBE two 3 day sore throats, and a partially stuffy nose. Until.... the virus of 2009. It would be much more exciting to say I had gotten the swine flu. If that is what it had been, I'd understand that hype given it, because I certainly felt like I could have died. I was MISERABLE.  

It all started Friday when I woke up with a sore throat. This had been happening off and on for a couple weeks, and I was fairly certain that it was allergy related, and after a benadryl it wasn't bothering me, so I was convinced it was allergies. I went off for tutoring and babysitting. My migraines are supersensitive to heat, dehydration, and blood sugar. This day, as well as the last few days had been particularly warm, and I wasn't very diligent about drinking enough water. I should know better. So, I got a major headache as well as nauseated in the middle of tuturing I pushed through that, and since I babysit in exchange for tutoring, the parents left with the assurance I'd call if things got worse. It's hard to get hydrated when your nauseus. I sipped some watered down apple juice, rested while the kids watched a movie, and my headache did go away. So, it was the heat, right? Oh that it were!

I went to bed that night feeling pretty good about myself, and woke up at 4 am vomiting really hard. I had no idea what hit me. That only lasted a couple hours so, I showered and went back to bed. When I woke up, I had a whole gamut of symptoms: nausea, dizziness, fever, massive headache, body aches and pains, with killer pains in my neck, low back and hips, chills, and sweats. I couldn't get out of bed, I was so miserable. By sunday my chest hurt around my rib cage, with sharp pains when I breathed deep, and I had a cough. My fever kicked into full gear, and I was good for nothing. I was throwing up again as well. That evening I started wheezing. Advil and Tylenol were my best friends. I was so miserable, my Mom was at work and my Dad incapable of caring for ME, that I called my best friends mom asking if she could just bring me some applesauce and be available if I felt I should go into urgent care if my breathing got worse. I was so grateful for her when she brought me applesauce and much more, checked my temp. etc. and made sure my Dad had anything he needed. Up until this point my fever had been slight and off and on but now it raged at 102 to 103 steady for several hrs, finally breaking about 4 am monday morning. 

So, I wake up monday morning fever free, body ache free, not nauseated, but with pretty bad chest pain, and shortness of breath whenever I stand up and walk around, plus a pretty persistent caught, and fever blisters all over my lips. Today, the wheezing is mainly when I walk up and down stair, the pain in my chest is only when I take a deep breath, and the cough when I walk up a down stairs or lay down but the fever blisters are even on my nose. I currently have a headache but, I think that is because I am in need of a nap. 

I have never been so sick or felt so miserable. I did go to the Dr. monday, and to both hers and my astonishment, tested negative for the flu, so its "just a virus". I have no idea where that virus came from but it hit me hard and fast. My boss pulled me out of work for the rest of the week, that's a story in it's self, he is a little irritated with me. Oiy.

Here is to hoping for a full recovery in the next day or so! And that no one else I was around gets it!!!

Love me some baby girl

Meet Samantha Riley. Isn't she just precious! My Dads friend and his wife just welcomed this precious girl a month early AND she STILL weighed 7pds! She is so sweet and perfect! They surprised us when they showed up un-announced with they new bundle. I was so tickled. It has been a 7 months since I got to hold a new born, too long in my opinion!




And just because my nephew is CUTER than life, and he started making this silly cheesy face when you take a picture:

Bunnies!!!

My 21 months old nephew LOVES animals. We went to the pet store and he just couldn't get enough of the hamsters, guinea pigs, etc. I love animals too, and thought it would be fun to have a bunny. So my mom and I went and got 2 baby bunnies (not from a pet store). They are VERY tame and sweet. Zackery loves them, and I am enjoying them as well!